Coping with mesothelioma

You might have lots of emotions to cope with after a mesothelioma diagnosis. And mesothelioma and treatment can cause changes in your body which can affect how you feel in yourself.

There is support available to help you cope during and after treatment.

Your feelings

You might have a number of different feelings when you're told you have cancer.

You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty
• sad

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and specialist nurses to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

You can also do practical things such as:

• making lists to help you
• having a calendar with all appointments
• having goals
• planning enjoyable things around weeks that might be emotionally difficult for you

Talking to other people

Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone other than your own friends and family. 

Or you may want to see a counsellor.

How mesothelioma can affect you physically

Mesothelioma and its treatment might cause changes in your body. These changes can sometimes be difficult to cope with. You might have symptoms such as a cough or breathlessness.

Surgery might cause scarring and you may have pain in the area for some months afterwards. Such body changes can affect your self esteem and the way you relate to other people, especially close family and friends.

Another problem you might have to cope with is feeling very tired and lethargic a lot of the time, especially for a while after treatment.

If you are having a sexual relationship, one or all of these changes might affect your sex life.

Compensation and claiming benefits

Most cases of mesothelioma are related to exposure to asbestos. If you know you were exposed to asbestos at work, you might be able to claim compensation from your employer at the time of the exposure. It may be helpful for you and your family to have some extra funds to help you to cope with the illness and its treatment.

If you are interested in making a compensation claim, you can ask your specialist nurse or social worker for advice. Your doctor will be able to provide medical reports to support your claim. They may suggest contacting a solicitor who specialises in asbestos disease claims.

You can also get advice and information from various support organisations.

You might be able to claim Industrial Injuries Disablement Benefit (IIDB). IIDB is a benefit that you can claim if your disability was caused by your work. Or you might be able to make a claim for a one off payment under the Pneumoconiosis Etc (Workers' compensation) Act.

Coping practically

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay, prescription costs and grants
• work issues
• childcare
• Blue Badge applications
• help with travel costs
• changes to your house

Talk to your doctor or specialist nurse to find out who can help. You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospitals have a social worker available for people with cancer.

Support at home

You might need some care and support at home due to mesothelioma or its treatment. A lot of practical and emotional support is available.

GP and community nursing support

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary depending on where you live.

Community or district nurse

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections

• check temperature, blood pressure and breathing

• clean and dress wounds

• monitor or set up drips

• give emotional support

• teach basic caring skills to family members where needed

• get special equipment such as hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Community specialist palliative care nurse

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.

Marie Curie nurse

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Local support services

There is usually other help available but services can vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.

Cancer Research UK nurses